I am frustrated, angry and ready to scream at the inefficiencies that bog down our hospital system.

Today was our third and final day spent in the dialysis unit in order to try to collect enough stem-cells to move forward with Gavin’s treatment. Each day, Gavin has to have a blood transfusion in order to proceed with the procedure. Each day, there is a chance that he may react adversely to the blood products or to the Benadryl he’s given to prevent an allergic reaction. Today was the day it happened.

He was quite calm and cheery when we went down this morning, but I noticed that shortly after he was hooked up to the machine he became increasingly irritable. Every question I asked him, he answered No, No, No. After a few minutes I said to the nurse, what’s happening, he’s really irritable? Shortly after that, all hell broke loose and he transformed into a kicking, writhing, screaming thing. I couldn’t do anything to calm him, and he broke out in hives all over his face and body. The nurses were pretty helpless to do anything as they had to wait for a doctor to come, assess, and give orders for meds. Finally, after what seemed eternity, our BMT doctor showed up and prescribed a dose of a steroid to calm him. It seemed to work and he slowly wound down, after half an hour of constant screaming, thrashing and punching, he fell asleep, still sobbing, in my arms.

When the procedure was over and done with, we returned upstairs to await the results. Yet again, not enough stem-cells were collected, which means we have to do the whole thing over again in a couple of weeks. A doctor came this afternoon to remove the femoral line from his leg, which means he’s finally free to get out of bed. However, we start chemo again tomorrow, so he won’t have much opportunity to enjoy his new-found freedom as he’ll be attached to an IV pole for the next four days.

Nothing about this process is easy, or goes smoothly. I’m so tired and saddened by how many times each day I have to allow him to be hurt. If one more nurse dares to say to me, “It doesn’t actually hurt him, he’s just angry/upset/annoyed,” I’m going to have to give her a good, swift kick. Seriously, is that something they are taught in nursing school? That it “doesn’t hurt” to have an NG tube inserted, or a catheter put in, or a line removed from your femoral artery? That it “doesn’t hurt” to have dressings ripped off of delicate, perfect baby skin? Yes, the tears rolling down my child’s face aren’t an indicator of pain, they say. I would like to understand their definition of pain, please.

I don’t have any patience for any of this anymore, and certainly no patience for the Hospital for Sick Children in Toronto. I’d be perfectly happy if we never, ever had to step foot inside the building again, but unfortunately for all of us, that will never be the case.

4 responses to “Chain reaction”

Oh Erica…I wonder if these nurses convince themselves that their words are true, to protect themselves. Of course we know our children better than anyone. Of course you know it hurts Gavin. And of course you have no patience left, who would. What you are trying to do, with these people as partners, is to save Gavin’s life. Don’t we all wish for some kind of miracle worker… who could accomplish that without pain. I’m so sorry and sad for all of you. Let’s hope for better days and kinder people. Love

Gosh Erica … I find it so hard to read your posts as I can’t imagine that you are living them. I feel like trying to “will” Gavin into good health and I’ve only met the wee bean once. I just don’t know where you have to go in order to be with Gavin through these procedures. I do know that a book is being created through your posts that mothers will want and need to read as they go through experiences such as yours. You are a beautifully, strong woman with a wonderful family and I continue to send you all love and positivity and healing.

big big big hugs my friend…I am always amazed at how you get through each day and each new challenge…let it out!!! We are all here for you – let us take your frustration, anger and sadness, we can handle it – please know it is healthy to vent and it is ok to not always have to put on a brave face…I will try to come by on either Monday or Tuesday after my hearing downtown – is it best to just call first, I guess?